Consultation on developing a National Autism Strategy

Closed 10 Jun 2022

Opened 29 Apr 2022

Contact

Amy Monroe

(Public Engagement Manager)

Quality, Safety and Engagement

+44 1624 685816

DHSCEngagement@gov.im

Feedback updated 30 Aug 2022

We asked

Part 1 – Listening to our autistic community

In Part 1, we asked our autistic respondents to tell us about their own experiences, and we asked family, friends and carers to tell us about the experiences of the autistic people they support.

We asked a mix of closed questions (ones with a list of answers to pick from) and open questions (ones which let people write in their own answers).

In total, answers to the open questions amounted to 195 pages of text. We analysed this text to pick out recurring themes in people’s answers, and then we counted the total number of comments relating to each theme. This let us see which issues are causing the greatest concern for our autistic community.

The 10 most prominent issues were:

  1. Lack of support resources, particularly for adults and those without a learning disability.
  2. Need for more mental health support.
  3. Lack of public awareness, and absence of reasonable adjustments in place across a wide range of settings.
  4. Lack of training and awareness among professionals, particularly relating to ‘high-functioning’ autism and autism in women and girls.
  5. Lack of social support, including worries about bullying and safeguarding.
  6. Difficulties accessing education, particularly higher or continuing education.
  7. Difficulties finding enough or the right kinds of information, particularly about what kinds of support may be available.
  8. Lack of support for finding or maintaining employment.
  9. Lack of support for wider family networks.
  10.  Over-reliance on medication relative to other forms of support.

You said

Part 2 – Listening to everyone

Part 2 of the consultation was open to everyone who wanted to be involved in the conversation about improving support for autistic people in the Isle of Man.

We asked what people see as the biggest barriers to accessing autism support in the Isle of Man. All groups identified long waiting lists as one of the biggest hurdles. Our autistic community also identified a lack of professional expertise, lack of public understanding, and a lack of funding as major issues. Professionals told us difficulties with staffing or staff retention were a significant barrier.

We asked what people would like us to prioritise in the first National Autism Strategy. The top 3 priorities for the autistic community are training for professionals, early diagnosis, and more support for families. Professionals also said they would like to see more support for families, and added early intervention and the employment of autism specialists as priorities. 

Finally, we asked everyone what would make the Isle of Man more autism friendly. The overwhelming majority of people said that more public education is needed to increase awareness, acceptance, understanding and inclusion.

We did

Next Steps

We are grateful to everyone who took the time to tell us how we can improve support for our autistic community in the Isle of Man. The information you gave us will be used to shape our National Autism Strategy, and will help us make sure we improve the things that matter to you most.

The National Autism Strategy will be published by December 2022.

Results updated 15 Apr 2024

Between 29 April and 10 June 2022, we ran a public consultation to ask our Island’s autistic community what they need us to include in our first National Autism Strategy. We wanted to find out about any current gaps in services or support, and what the community’s priorities for improvement are. We asked a range of questions about autistic people’s experiences, needs, and values, to give us a better understanding of how we can help our autistic community to flourish. 

In total, 392 people responded to our consultation. Of these:

  • 120 people were autistic, or thought they might be autistic,
  • 188 were parents, relatives, partners or friends of autistic people,
  • 6 were carers answering on behalf of an autistic person,
  • 41 were education professionals,
  • 27 were health or social care professionals,
  • 2 were criminal justice professionals,
  • 3 were answering on behalf of an organisation, and
  • 5 were none of the above.

The consultation was split into two parts. In Part 1, we wanted to hear about what life is like for autistic people in the Isle of Man – this part of the consultation was only for autistic people and their family, friends and carers. In Part 2, we asked everyone (including professionals and other interested parties) what they thought would improve support for our Island’s autistic community.

You can see the full breakdown of results in our Autism Consultation Report.

Files:

Overview

The Department of Health and Social Care (DHSC) is writing a National Autism Strategy. This strategy will help us to improve the way we support our autistic population and their families, by making sure services are provided fairly, effectively, and where they will do the most good.

Please note: We are interested in all Autism Spectrum Conditions (ASC), including Asperger’s Syndrome. We use the words ‘autism’ and ‘autistic’ to mean anyone with any ASC, including Asperger’s – this is done to make the questions easier to read. We understand that not everyone on the spectrum feels the same or has the same needs, and we have no intention of stigmatising or overlooking any part of the community.

Why your views matter

We are asking these questions because we want to hear about the experiences, needs and values of autistic people of all ages (adults and children), so that we can better understand how to support you across the course of your life. If you are on the autism spectrum (or think you may be but haven’t been diagnosed), we want to hear from you. We also want to hear from carers, family and friends of autistic people.

By answering these questions, you will help us understand more about the needs of our autistic population, and how those needs can best be met. It is important that you tell us what you need and value most, so that we can write a National Autism Strategy that works.

How to respond

You can respond online on the Isle of Man Government Consultation Hub, by email to DHSCEngagement@gov.im, or in writing to:

Amy Monroe,
Department of Health and Social Care,
First Floor, Belgravia House,
Circular Road,
Douglas,
IM1 1AE. 

Telephone Number: 01624 685816.

If you would prefer to answer these questions in person, we will be holding drop-in sessions at the places listed below, where you will be able to get a paper copy of the questions and go through them with someone face-to-face.

  • Tuesday 3 May, 10am to 12pm - Autism Initiatives, Nunnery Howe, Old Castletown Road, Douglas
  • Monday 9 May 10.30am to 12.30pm - Autism Initiatives, The Oaks, May Hill, Ramsey
  • Thursday 12 May 5.30pm to 7.30pm - Autism Initiatives, Nunnery Howe, Old Castletown Road, Douglas
  • Tuesday 17 May, 4pm to 6pm – University College Isle of Man, Homefield Road, Douglas
  • Thursday 19 May, 1pm to 3pm - Centre 21, Greenfield Road, Douglas
  • Friday 20 May, 10am to 12pm – University College Isle of Man, Homefield Road, Douglas
  • Friday 27 May, 12pm – 2pm - Crossroads, Units B5 & B6 Eden Business Park, Cooil Road, Braddan

You can book a specific time-slot at any of these drop-in sessions by visiting the Eventbrite booking system. We will do our best to accommodate any special requirements – please contact DHSCEngagement@gov.im for more information.

The deadline for responses is 00.00 Friday 10 June 2022.

What happens next

Thank you for taking the time to complete this survey. Your responses will help us to understand how we can create a truly autism friendly island.

We will combine all of the responses we get so that we can build a picture of what matters most to our autistic community as a whole. We will use this information as a guide while we write our National Autism Strategy, so that we can make sure it produces the biggest improvements for the greatest number of people possible.

We will publish the results of this consultation as a ‘You Said, We Did’ report no later than 29 August 2022.

Areas

  • All Areas

Audiences

  • All residents

Interests

  • Disabilities & long term conditions